I am raising a teenager who has epilepsy. My job is to do whatever I can to keep her healthy and safe without making her epilepsy Who she is. This blog is simply about the day to day life of a teenager, who happens to have epilepsy.
Wednesday, June 6, 2012
The Wires Come Off
It'd be great to get to writing without distraction since it is 9:30pm. But my willful child has decided to meander out here, her face all screwed up trying to think hard of an excuse as to why she needs to be out of bed. This is a normal occurrence here in this house. Now I can't say for sure but it seems that even though her first big ticket seizure happened with me next to her in the bed, lately it seems like she is not having them if she is next to me. Some mornings if I hear her stirring before the Seizure Witching Hour, I'll ask her to come lie down with me. She's been fine with that set up.
But now that I've said it out loud, I've probably inadvertently petitioned the universe to test the theory.
And naturally, since she was all hooked up with her 24 hour EEG all night, there wasn't a seizure to be found. They are in fear of recordings...similar to how Native Americans believed the soul would be captured in a photograph.
On the way down, the Humanling insisted on doing the usual music bargaining - making sure to start before we even backed up to leave the driveway. Miranda Cosgrove. Seeing that I have heard these songs over and over again, I counter offered - ONE song. And it can't be dreary.
She got one song. And it WAS dreary. I cringed and then noticed that my left foot was tapping the floor to the dreariness of the beat.
She also mentioned to me what her costume is going to be for Halloween this year - a female prisoner. Because that's the theme in the Lady Gaga "Telephone" video. Great. How about a giant padlock instead to keep you in your room on Halloween?
We were late getting out the door to have the wires removed and the woman removing them was almost fully direct in verbally spanking us. Almost. She more or less complained loudly, letting us know that this could really alter the orbits of the universe.
Seven minutes later we were outta there!
So she had a two day hall pass from school. And spent a lot of time today making up for not being on the laptop yesterday.
We played more Junior Monopoly tonight and ended up in a deadlock. I played Eddie Rabbitt's "I love a Rainy Night" for her and she seemed to like it. So I upped the ante to "Footloose" by Kenny Loggins. I don't know how the two are related but in my head it's a natural progression.
For now she's gotten her way (sort of). She is laying down on my bed under the condition that if she was not sleeping within 10 minutes of her head touching the pillow, she is sent back to her bed, no questions and no bargaining. It worked.
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